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Child leprosy in India In this issue: LEPRA staff fill a gap in LF services The painful reality of a disabling disease

May 2011 www.leprahealthinaction.org


LEPRAnews

In this issue

Welcome Welcome to the May edition of LEPRA News. In this issue we are focusing on the impact that the declaration of leprosy elimination as a public health problem in India has had on children and adults over the last five years. We reveal that children as young as 12 are in need of reconstructive surgery and, until meeting our caring staff, are frightened of the prospect. You will also read about the plight of Subnam, a woman with the worst symptoms of lymphatic filariasis (LF) that any of our staff have ever seen, and how they are working to alleviate her condition. Read also about how our bike rides make a difference, and how you can help through donations or gifts in Wills. If you would like further information on any of the topics raised, please get in touch. Thank you for your continuing loyalty to LEPRA. Joanna Belfield Editor, LEPRA News fundraising@leprahealthinaction.org

Photography LEPRA Health in Action Colin Summers Photography Design and Print The Print Connection, 01473 810230

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Message from the CE

3

Cover Story

4

Leprosy poses a renewed threat in India

Meet the team

7

Four remarkable volunteers

Programme News

8

Jenny Barraclough visits LEPRA beneficiary Subnam

Programme News

10

Plugging a gap in LF services

Fundraising News

12

Fundraising News

14

How you’ve helped

16

Bharthi Bhai - living with leprosy and LF

Dates for your Diary 2011-12

Editor Joanna Belfield Contributors Sarah Nancollas - Chief Executive Raja Ahmad - Programmes Officer Alicia Mills - Programmes Coodinator Nicolette Dawson - Communications Jenny Barraclough - Board Member Adam Storring - Volunteer (India) Karen Page - Events Fundraiser Lizzie Dearling - Events Fundraiser Irene Allen - Asst Editor Leprosy Review Ros Kerry - Community Fundraising Community Fundraising Team

May 2011

Reg Charity no. 213251 Charity registered in Scotland no. SC039715

LEPRA Health in Action 28 Middleborough Colchester CO1 1TG 01206 216700 www.leprahealthinaction.org

Edinburgh Marathon 22nd May

World Disability Day 3rd December

Bupa London 10k 30th May

Great Swims (1 mile) Various dates and locations

Chester Marathon 9th October

Supporters’ Trip January 2012 - date TBC

Dublin Marathon 31st October

India Bike Ride January 2012 - date TBC

NEW! India Bike Ride November - date TBC

London & Paris Marathon 2012 - dates TBC

World Aids Day 1st December

For more information about these fundraising events, please email events@leprahealthinaction.org or telephone 01206 216799. More details are also available on our website.


messagefromtheCE

Bike rider Jenny meets Shriya and Harish at a LEPRA-run hospital

Linking up our programmes and fundraising in Vizianagaram As Chief Executive, I am lucky enough to be involved in all aspects of our work including fundraising, advocacy and programme delivery. However it is very rare for all of these aspects to overlap in one activity. Recently, I was able to observe the real synergy that is created when this happens.

Sponsored bike rides form a strong pillar of our fundraising. Supported by local LEPRA Health in Action staff, they are based around visits to LEPRA’s projects and bring the opportunity for bike riders to interact with the communities we help. I know that this gives our bike riders a unique experience and direct knowledge of how their money is spent, but what surprised me is how important this interaction is to our local staff and the communities they work in.

The sight of 19 individuals, pale skinned and dressed in orange t-shirts, cycling through a village in India is enough to stop the traffic and creates an ideal opportunity for our support team to talk about our work. The local press provide daily coverage, and important dignitaries turn out to start the ride each day. Perhaps of greatest importance is that the people we work with see how the money that supports them is raised. Learning that someone who doesn’t know them is prepared to cycle 540km to raise money to help them is empowering, and puts a human face on the money that supports life-changing activities. I met the father of six-year-old Shriya a few days after the bike ride had passed through his town. Both are HIV positive. He didn’t want to talk about the difficulties he faced after Shriya’s mother had died - he just wanted to tell me about the bike riders holding his child. He proudly showed me the photographs they had left behind, carefully stored in an otherwise empty wallet. Reflecting back on my first six months, I have been trying to identify what makes LEPRA such an effective organisation and have realised that it is our focus on the individual. Individuals raising money for work with individuals, giving time and space to each and every person makes a powerful force for change. I would like to thank you for being one of those individuals in whatever way you support LEPRA.

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COVERstory

Caption

Surgery returns the use of Sabar and Anita’s hands

Leprosy poses a renewed threat in India Leprosy is one of the world’s oldest diseases and continues to pose challenges for public health, especially across India where more than half of the world’s new cases are found. In 2005, the Indian government declared that 4 | healthinaction

leprosy had been eliminated as a public health problem, which led to a reduced focus on the disease, and the skills to diagnose, treat and manage it. Ultimately, this announcement has had a negative impact on lives.


COVERstory Non-governmental organisations including LEPRA Health in Action and other leprosy control organisations, were required to stop active leprosy case finding and conducting surveys that ascertain whether or not another family or community member has the disease. This revised approach to leprosy control has resulted in thousands of people missing out on diagnosis over the last six years. According to the World Health Organisation (WHO), leprosy elimination is reached when there is less than one new leprosy case for every 10,000 people. It still means there are more than 150,000 people in India newly diagnosed with leprosy each year who carry the potential risk of spreading the infection within communities. In 2007, LEPRA expressed concern that complacency in case finding could result in the re-emergence of leprosy. While talking to the BBC’s medical correspondent Fergus Walsh, our then senior medical doctor Arunabala Choudhary, said, ‘A few decades ago TB was said to be eliminated and people became complacent. The bacteria of TB and leprosy are similar, if we find that the complacency is there, maybe leprosy will crawl back in the same way.’ Such concerns have now become a reality as infection rates have started creeping up. LEPRA’s field health staff come across many hidden cases of leprosy every day, and the number of people with advanced leprosy is on the rise. One of the reasons for this is late diagnosis. Anita, pictured on the front cover of LEPRA News and left, is 14 years old and her brother Sabar is two years younger. Both have contracted leprosy and received late diagnosis. Both have been left with a clawed hand because their cases were ‘hidden’. If their condition had been caught in time they would not have needed surgery. LEPRA’s physiotherapist Nagasur tells us that it is very rare to see children of this age at this stage of progression, but with the number of child leprosy cases increasing in Orissa, this may change. Anita and Sabar received surgery for clawed hands four weeks ago at a reconstructive surgery centre supported by LEPRA. Coincidentally they both received surgery for their right hands. With very few places offering this surgery they

feel very lucky. Sabar has subtle, already fading surgical scars in his right palm, wrist, and on the back of every finger – the scars here are just 15mm long. The nerve and tendon transfer was taken from Sabar’s wrist and lower part of his arm. Both children cradle their right hands protectively, and you could be under the illusion that their fingers were still clawed. Yet when they perform their physiotherapy exercises, you can see that their surgeries have been successful. According to the WHO in 2010, there were 133,717 new leprosy cases registered in India alone, and of these, ten per cent were children. After reports of a rise in identification of new leprosy cases at an advanced stage, the Indian Government commissioned a nation-wide survey to determine the number of people with leprosy. The report should be finalised by the end of July 2011. However, early media coverage indicates a significant increase in the number of new leprosy cases in the advanced stages of the disease. LEPRA is coordinating the survey along with government health officials and we will update you once the results are available.

Leprosy in India at a glance n Leprosy has been declared ‘de-eliminated’

in Orissa with prevalence moving from 0.6 to 1.09 per 10,000 people n Every four minutes, a person is diagnosed

with leprosy n Around 13,500 children are found to be

developing leprosy every year n Every year the total number of people

living with leprosy-related disabilities increases by 3,500 n Seventy-five per cent of reconstructive

surgeries are still being performed in hospitals managed by NGOs n Over the last 20 years, more than 15

million people worldwide have been cured of leprosy

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news

The uncounted ghosts A doctor listens to the lungs of a TB patient

LEPRA research identifies new biomarker A new study from LEPRA’s research facility, the Blue Peter Public Health Research Centre, has made a discovery regarding a possible way to detect tuberculosis early in HIV positive people. HIV works by infecting a category of white blood cells - a cornerstone of our immune system - and slowly depletes the body’s capacity to replace these dead cells. Some other pathogens, like TB, are able to exploit this immune defect in people who are HIV positive. Sixty per cent of people with HIV in India die from TB. This is mostly due to problems with late or no diagnosis. Reasons include socio-economic or health system issues. Also, TB is difficult to diagnose in people with HIV. This is largely because it is more common for TB to live in the lower part of the lungs which means sputum may appear uninfected. Solutions like LEPRA India’s village sputum collection centres have made it easier to identify people suspected of having TB, and test their sputum accordingly. However, the problem with difficulty of diagnosis remains. One of the ways in which the immune system knows which cells are compromised is through special markers sited on the cell walls. When infected cells realise that they are compromised, they stick a ‘CD’ protein on themselves which instructs other cells to kill them. Our study looked at the amount of ‘CD38’ found within people who have HIV. ‘CD38’-marked cells effectively limit TB. In people with HIV, these cells were found to increase during the first two years after HIV infection but rapidly decrease after two years, due to the fact that the immune system has been severely compromised. This means that potentially, someone with HIV with few CD38-marked cells could have TB. Further studies may mean that this new discovery of a biomarker could be a potential new way of diagnosing TB in HIV positive people.

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Reliable data is integral to successful public health programmes. Poverty not only increases vulnerability to diseases like malaria, but also makes it more difficult to collect information on the scale and scope of a disease. Lack of access to health services is an important factor: if people never set foot inside a healthcare facility, deaths will go unreported and unexplained. The WHO estimates that 15,000 people die every year in India from malaria. A peer-reviewed study recently published in The Lancet has put that figure at 201,000 people dying per year in India alone. That is equivalent to 100,000 people more than the declared total global mortality rate. Whatever the real data, it is important to realise that the burden of malaria in India is likely to be grossly underestimated and therefore urgent action is needed. Registering patients for malaria treatment


meetTHETEAM

Four remarkable women one healthy community This photo illustrates the way that just four individuals, working together, with the support of LEPRA Health in Action, are saving the lives of rural people. These four women link the communities in their area near Koraput in Southern Orissa. LEPRA was instrumental in the setting up of a sputum collection point in a local community centre and establishing the ‘chain’ that these women form to connect their communities to TB testing and cure. Steps in the chain include health education, sputum sample collection, transportation, collecting medication, administering DOTS (the Directly Observed Treatment short course that is observed by someone else in order to increase treatment success and avoid drug resistance) and follow-up. Niru is a local government health worker, pictured here with her notebook. She says, “Now thanks to LEPRA we can collect sputum and link patients with DOTS.” Sanjukta, pictured with her bicycle provided by LEPRA, is the local Accredited Social Health Activist - a person selected from the area to work as an interface between the communities and the public health system. Sanjukta collects the sputum from the clinic. She puts the small plastic pots into a special bag provided by LEPRA and cycles around 12km on the winding roads to the government microscopy centre where they are tested for TB. She waits until the sputum has been tested and then rides back to the village with the results. Meena is the local Anganwadi worker - someone responsible for improving child and maternal health - and for Sanjukta’s part in organising

(From left) Niru, Meena, Maleswari and Sanjukta make treatment accessible

community health days for women. She is pictured in yellow holding one of the small pots used to collect sputum samples during the clinics she runs on the first and third Wednesday of every month. The clinic serves a population of 4,000 people. She says, “Before LEPRA there was TB treatment but these communities could not access it. LEPRA has provided us with the mechanism for getting the diagnosis and DOTS.” Maleswari pictured with a blue patient record card is a volunteer DOTS provider. When a sputum test returns a positive result, Sanjukta passes the medication she has received for the patient on to Maleswari. “I go directly to the patient’s house and tell them that they need to take the treatment. I tell them on which day they will take it and I sit with them while they take it. I give only one dose at a time, take back the empty pill strip and record it.” She holds up the treatment card and shows everyone watching the empty pill strip in her hand. She told us, “They can be treated and they live.”

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programmeNEWS

Subnam and her children after eight months’ of care

Fifteen years in the shadows by Jenny Barraclough

One day a local journalist called Santosh walked into our LEPRA office in the sprawling overcrowded city of Dhanbad, in Jharkhand. He was coming to do a piece about our work with people living with lymphatic filariasis (LF). This disease is commonly known as elephantiasis, and can cause severely swollen limbs. Santosh looked around at the people waiting, some of whom had very swollen legs. He asked a lot of questions, more than any other journalist had asked and seemed reluctant to leave. The following week Santosh came back and quietly asked one of our health workers if they would mind accompanying him to his home. When he opened the door, Rajni, LEPRA’s Project Coordinator, found the journalist’s wife sitting immobile in their only room. Santosh asked her to pull up her sari. What

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she revealed was the worst case of LF that our staff had seen. Her leg was hugely swollen and misshapen at the calf and the sheer weight of it, let alone the awkwardness, made walking almost impossible. The first time he saw her, Rajni was shocked. He really felt for her.


programmeNEWS

Santosh’s wife was called Subnam, a warm but shy woman. She said that every 15 days or so she would get a high fever and ache all over.

She described how the disease started to attack her about 25 years ago and after 15 years her leg was already so ‘ugly’ that she stopped going out. She had not left the house for 15 years. Santosh asked if there was anything we could do about it. So Rajni taught Subnam how to clean her feet meticulously so that there were no cracks which could become infected and give rise to the fevers. Soon the fevers stopped. LEPRA also taught her how to massage the swelling to reduce it. Eight months later I went to visit Subnam at their home down a narrow alleyway, full of the neighbours she never met. When I went in she was sitting with her leg covered and her caring family around her. You may remember from the last LEPRA News that I had previously met Naseer whose family despised him and whose life seemed to be a living hell. Some people, who are discriminated against for having LF, are turned out of their homes. Subnam told me that sometimes she nearly went mad looking at those same four walls and two years ago she had wanted to kill herself. She was helped out of her black despair when the family with difficulty, half carrying her, managed to get her up onto their small roof where at least she felt the sun on her face and could look down at people in the alleyway below. Yet it was so difficult that it happened only rarely.

One of the miserable things about LF is that the leg should be kept up for as much of the day as possible, every time it is down the liquid gathers. Subnam’s bed now slopes upwards at the end - one of the small things we were able to do for her. She now has a shaped foam rubber mattress especially made for her side of the bed. Cooking is difficult, so Subnam sits preparing the vegetables and her daughter cooks them. One of the things LEPRA does is support the government’s Mass Drug Administration (MDA) in endemic areas to break transmission of the disease. Of course in many areas this does not yet happen and, until it does, this terrible disease will go on blighting people’s lives. The tragedy is that because people are so ashamed of how they look, they hide away in their houses which is why the disease is so neglected. Now someone visits Subnam regularly to keep her company. A wheelchair is on the cards. I left Subnam’s house trying to imagine staying inside one room for 15 years because of the shame of being seen in public. Disfiguring diseases like leprosy or LF bring with them a terrible loneliness which is as destructive of human happiness as the disease itself. Subnam’s calf – the worst ever case of LF that our project worker had seen

Since LEPRA came into her life, the fevers have gone and she is happy. Her daughter massages her leg every night. It’s hard work that exhausts the hands. Because of Indian women’s extreme modesty it is hard for a man to do this. The idea is to push the liquid up the leg so that eventually it is excreted. This way with regular massage a swelling can be reduced by 30 per cent.

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programmeNEWS Although India has the optimistic target of eliminating LF by 2015, in practice the disease is a low priority for public health system services. I asked the District Supervisor for the government’s LF control programme how many staff he had. “Four,” he replied, “For a district of 4.8 million people.” In theory, while local health activists carry out annual mass drug administration (MDA) to the whole population to kill filarial worms, and local panchayats (village councils) are responsible for mosquito-control, District Filaria Units should provide care for those affected by the disease. However, the Krishna unit lacks the staff to do this. The District Supervisor told me that he wasn’t even able to survey the district properly to find out how prevalent LF actually was. An irate local politician said he was organising a campaign to publicise the lack of services.

Reducing swelling is crucial for Pedda and others affected by LF

Plugging the gap: LEPRA staff and researchers step in to fill a gap in LF services by Adam Storring Krishna District is one of the most mosquitoprevalent areas of Andhra Pradesh. The network of irrigation canals and reservoirs that help make it one of the most fertile districts in the state are also excellent breeding grounds for mosquitoes. At the small town of Nuzvidu, I visited a selfcare camp run by LEPRA for those affected by one mosquito-borne disease: Lymphatic Filariasis (LF).

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In response, LEPRA has been stepping in to fill the gap. It runs self-care camps in each of the four divisions of the district, where patients are taught simple techniques to reduce the swelling in their legs and feet. This includes washing the affected limbs daily with water, and keeping them elevated while sitting or lying down. Meanwhile, the researchers at LEPRA’s Blue Peter Public Health and Research Centre have been working to discover how prevalent filariasis actually is in the district. They visited two sample villages, and tested the entire population over a period of days. The results showed that the level of filariasis infection was more than twice the State average. Moreover, the researchers found that only about half of the population, all of whom are supposed to be covered by MDA every year, had actually received the drugs. While colleagues in the field treat those affected by the disease, the researchers are gathering powerful evidence to show the magnitude of the problem, and the need for action. It will then be shared with the public health authorities. Adam Storring took leave from the UK Department of Health to work for LEPRA India for seven months as a volunteer.


legacy

LEPRA’s walk for leprosy reaches wide audience

Legacies – see the future through Chandau’s eyes

Legacies – a lifeline for the future Many of us put off making a Will because we fear that it will ‘tempt fate’. However, it is not something that should be delayed, but rather embraced to ensure that wishes can be met after death which, we all hope, is a long way off. This avoids complications and family disagreements at a time when emotions are running high. For LEPRA, legacies are a vital lifeline to ensure that our work can carry on in the future. If we know that we have expectations of funds, we can plan our long term work more effectively to guarantee that life-saving treatment reaches those who need us most – those who are the poorest of the poor. What a wonderful gift to give – the assurance that our vital work will carry on, and the knowledge that you personally have made this possible through a legacy to LEPRA. We know that all of us are facing straightened circumstances in one way or another in the future, and are anxious about our own financial security, but those we serve are in desperate need of our help, and have nowhere else to turn. After bequests to your family and friends, we would ask you to consider LEPRA. Will you help us by ensuring that our future is secure by leaving a legacy to LEPRA in your Will? Thank you.

Local hero Mr Narsappa fights for the rights of leprosy-affected people

As part of the awareness-raising activities organised by LEPRA, around 900 people, including those affected by leprosy, took part in a walk through the city of Hyderabad on World Leprosy Day. Amongst them was the leader of the Society for Leprosy Affected People in Andhra Pradesh, Mr Narsappa, pictured above. Mr Narsappa is the President of the Shantinagar leprosy colony where he resides with 500 others. He recently featured in Unreported World’s India Leprosy Heroes episode on Channel 4 highlighting the problems of stigma and discrimination still faced by people affected by leprosy, and its hidden cases in India. Helping people to find a voice and fight back against both the disease and the social and economic repercussions is so important, and we thank you for your support.

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fundraisingNEWS

LEPRA bike ride team 2011

Cycle miles and help make smiles A big thank you goes to all 19 supporters who took part in another India bike ride, visiting projects and raising over £40,000 for people affected by leprosy and other disabling diseases. Howard Crossley, one of the riders, is keen to share his experiences of LEPRA’s work: ‘I have been on eight LEPRA bike rides in as many years; two in Madagascar, one in Malawi, and five in India. They have all been wonderful adventures but India is my favourite. ’ ‘We visit places that tourists rarely go. Personally I love both India and seeing the work that LEPRA does in preventing and treating diseases of poverty, often in remote tribal areas where there are very few medical facilities. To see such love, care and efficiency is to see the human spirit at its best. I am proud to be associated with, and raise money for, LEPRA.’ ‘Going into LEPRA’s health centres and shaking hands, or what is left of hands after advanced leprosy has done its damage, is unforgettable; as is the meeting with other patients and feeling the rapport and gratitude from people often feared and shunned by their societies.’ ‘The rides are through quiet forests with tropical birdsongs, through bustling cities, towns and tribal villages. The whole experience has enhanced my life and I plan to do as many more rides as I can.’

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NEW! By popular demand we are introducing a new India bike ride this November, this time exploring Madhya Pradesh, and visiting different projects. To join this or any other challenge please call the Events Team on 01206 216799 or email events@leprahealthinaction.org. Karen and Lizzie are waiting to hear from you.

What other bike riders said... ‘I took part in the bike ride to learn about India and the leprosy situation with a view to working with leprosy patients in the future. The result was I loved the country, the people and I long to work over there as soon as I can. The bike ride was so well organised. We all felt looked after and very safe.’ Jenny Clarke ‘An experience of a lifetime – the best thing about the trip is seeing the projects and the work your sponsorship is going towards.’ Hannah Verghese ‘A unique opportunity to see a completely different lifestyle, which despite the obvious poverty contains lessons that we all could learn from. Allin-all it proved most amazing, uplifting and thought provoking. My only regret is that I didn’t do it sooner.’ David Brayshaw


fundraisingNEWS

Supporter testimonial: Why I support LEPRA One of the many rewarding aspects of being the Editor of LEPRA News is receiving the letters that come in from our supporters. On many occasions I get to know what it is that keeps an individual loyal to our cause, and sometimes a little about a supporter’s passions and life. One such supporter is Anna Day. Anna saw our work first hand on the Supporters’ Trip 2007, and tells us why she continues to support our work in her own words: ‘I have always been moved by the dignity and power that is returned to the people LEPRA cures and helps. First of all, LEPRA educates communities on the truth about leprosy. Then LEPRA passes on the knowledge about the correct way to bathe, cleanse and care for damaged feet, hands and limbs. Children learn to watch for the early signs of the disease such as patches.’ ‘If children know it is a disease that can be cured, leaving no deformities if treated early enough, then this in itself is a route to ending the fear and stigma attached to leprosy. If the children are not afraid and know it can be cured, there is hope for the future. The children are our future, and

hopefully one day the stigmatisation and fear of leprosy will disappear.’ ‘The stigma and fear of leprosy is so appalling that I am humbled by, and proud of women like those featured in the September issue of LEPRA News. For Sobita, being thrown out of her own home to overcome such devastation and have the strength and ability to set up and teach former patients the misconceptions and superstitions about the disease is so amazing.’ ‘I was proud of Sobita’s determination and strength to set up her rice husking business to support herself, and to campaign and teach others that leprosy can be cured if detected early, before nerve damage has begun.’ Anna’s sincere account captures clearly what we do in improving the lives of those affected by leprosy and why she has chosen to leave a legacy to LEPRA. We thank Anna for this and hope that her testimonial will encourage others to continue their support. Please send your letters to The Editor, LEPRA News, 28 Middleborough, CO1 1TG.

The life-affirming story of Sobita was featured in the September issue

Welsh workouts Welsh school children have raised thousands of pounds for LEPRA by doing sponsored street dance workouts. The Cathedral School in Cardiff recently raised over £1,400, Tonyrefail Comprehensive raised almost £1,100 last year, and the latter school are about to do another event this year. Some of the schools in Wales have supported LEPRA for ten years and, without the help of Welsh school children, we could not do some of the work we do.

These children are having a positive impact on the lives of some of the world’s most marginalised people.  Pupils at Cathedral School

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fundraisingNEWS

Pupils at Yarm school work out for LEPRA

Yarm school strikes up the band for LEPRA Students at Yarm School in County Durham raised the roof and over £1,000 in support of LEPRA Health in Action by taking part in a ‘funky fun’ fancy dress workout for LEPRA. The costumes were wacky and glorious, the wigs were curly and outrageous, the music was loud and the voices louder, and much fun and hilarity were had by all. This is just the kind of response that LEPRA likes to see from the young people who so willingly and enthusiastically take part in school events and raise much needed and valued funds in support of our work. It is great to see young people having so much fun with LEPRA and thank you to Yarm School for superb and life-changing support.

St Lazarus of Jerusalem raises funds for leprosy education and healthcare The Commandery of King Offa of the Military and Hospitaller Order of St Lazarus of Jerusalem invited Regional Manager Eileen Evans to attend their Easter Social on 5 March. Following presentations about the Order and a buffet, Eileen was presented with a cheque for £3,500 to go towards LEPRA’s work with leprosy. It was then Eileen’s turn to present, and she told the room about the realities of limited access to healthcare. She explained how our mobile health education vans reach thousands of people – and how this donation would help to pay the running costs for a van for a year. A very enjoyable evening was had by all.

Riding Ribston Hall by Lily “My friend Charlotte, my Dad and I did a sponsored bike ride to raise money for LEPRA. We rode for 20 miles from Frampton-on-Severn, along the canal to Sharpness. I raised my money through Lily and Charlotte on a pantomime that I was involved in and their bikes for LEPRA word spread that I was doing the bike ride and I just got more and more money! In total I raised £100! Charlotte raised her money with her family members and friends supporting this charity.”

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Obituary: Henrietta Search (1943-2011) Henrietta Search, until recently a trustee of LEPRA, died peacefully in University College Hospital on 27th March after a brief illness. She is survived by her daughter Jessica and son Dominic. Henrietta’s career in international health and development started in 1985 as projects manager and subsequently overseas Programmes Director for Marie Stopes International. In 1994 she was appointed Managing Director of Options and grew it into the successful health management and consultancy organisation it is today. As a consultant, Henrietta worked in many countries in Africa, South Asia and South America until she suffered a debilitating stroke in Kenya in 2007. A combination of courage and steadfast determination enabled her to overcome her disabilities and resume an active life, continuing as a trustee of LEPRA and as an active member of a poetry group. Henrietta’s expertise in strategic planning, finance and organisational and human resource planning was invaluable to LEPRA, as was her honest and wise counsel to the Board.


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we would like your help self-care treatment for lymphatic filariasis (LF). Loss of sensation caused by leprosy has left Bharthi with no feeling in her feet. She placed her left foot on a special rest so that we could take a closer look. On the ball of her foot was a deep ulcer. We could see how the skin around it was looking better as a result of the ulcer care she receives at the centre. She also showed us an injury to her heel where a nail had gone through her shoe. Her new black leather shoe has a sturdy strap across the foot and a silver buckle - comfortable shoes with cushioned inner soles that compress when squeezed between thumb and forefinger. These special shoes cost around £4 per pair and are made-to-measure for patients by a LEPRA shoemaker. They redistribute the weight to help avoid further damage to the feet. Bharthi has been coming to the centre for quite some time. She told us how her family had disowned her when they found out that she had leprosy: “They gave me somewhere to live, but said I am nothing to them.” She looked very sad when she told us how she now lives alone.

We took this picture of Bharthi at one of LEPRA’s health centres, in the heart of Dhoolpet, in Hyderabad. She had been sitting with both of her feet in a green bucket filled with water to soften her skin. Bharthi was having the ulcers on her feet cleaned and dressed, a visit she makes every two weeks. She is also receiving

Dr Krishna, LEPRA’s consultant, is confident that like other patients receiving care, Bharthi’s condition will improve. “I never let my patients get to the stage that they are disabled!” he says. A gift today can help more people like Bharthi to get back on their feet.

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LEPRA News May 2011